Well trained in dysfunction

You’ve been practicing these habits for a long time and it will be hard work replacing them.

So said a good counselor after hearing another summary of my neurotic accommodations to life’s challenges.

While “normal” life invites us to try out personal training in dysfunctional thinking and behavior, care giving pretty much necessitates it.

Are you angry?  Practice holding it in because if you get loud or take a tone it will upset the person in your care.

Are you a people pleaser with crummy boundaries?  Keep pulling down your fences and pushing open your gates because you’re Just So Needed.  Where will those loved ones be without your sacrificial efforts?  I mean, the whole world might come off its axis if you stop.  And It’s All Your Fault.

Are you the addictive type?  Eat, drink, smoke or otherwise imbibe comfort, ‘cuz you ain’t gonna get it from healthy relationships (of which, it should be said over and over, you’re manifestly unworthy.)

20170715_131800A friend sent me this pro wrestling poster from our younger days.  Pro wrestling is a good simile for what I’m talking about here.  Yes, they train hard.  But it is to produce a product that is fake.

Hey, it draws cheers from the crowd if you do it right.  Even if all the pretense might leave you crippled.

My big discovery this week is that things are worse than I thought.  Why do you try to play God and take the world on your shoulders?, I’ve been asked more than once about my care-giving-supplemented anti-health training.

But that would be easy to address, wouldn’t it?  I mean, it’s a simple confession that my pride is taking on stuff beyond what a normal being can do, so the path of repentance is clear: identify the over-the-top stuff and leave it to God.

But what I realized this week is that I’m not playing God: I’m worshiping a false god, an idol.

Trying to make everybody happy and ensure good outcomes, the focus of my relentless training, IS NOT SOMETHING THE REAL GOD CLAIMS TO DO.

It is a fake god, a demon.  I’m not stepping into the middle of the universe to play God, which reality quickly corrects.  I’m wandering around in a phony universe, a simulation that maintains the lie and never delivers on what it promises and promises and promises.

Although a humiliating discovery, when I was able to express it I felt about 500 lbs. lighter.  Some restoration of health and sanity is already underway.

I wish I could say that it was like an exorcism and now the idol is gone and I’m back to reality and can’t we all just get along?  But there’s much more to do.

My working name for the idol is “FEAR.”  Fear goes back a long way in my life, taking up residence (at least as far as I can consciously regress) in childhood trauma that I’m not going to dump here.

But it now pervades everything. It warps decisions, it mocks every thought and stalks every experience.  It casts a smoggy haze over relationships.  Decades of care giving, with all the could-go-wrongs and worries that accompany it, helped FEAR embed and enlarge in my soul.

So I need to change my exercise program.  I need to pull down and smash the stones of which this great idol is built.

When people were dazzled by a great ancient temple, where political power and profit had displaced prayer and the presence of God, Jesus of Nazareth said, Yes, look at these great buildings. But they will be completely demolished. Not one stone will be left on top of another! (Mark 13:2, New Living Translation)

I’ve been repeating that – not one stone left on top of another – as the voice from the FEAR altar snarls in my consciousness.  My resistance training now must be pushing and pulling down worries and expectations over which I have no control, and stepping up to action where I can be responsible.  Saying NO more often.  Speaking for myself instead of bouncing back what I think someone expects me to say.

I hope this reaches some folks at the start of their care giving years.  Please, please, please: don’t smash yourself.  Smash the stones that are piling up – the false expectations that ask you to do things that aren’t necessary and/or by which you hope to gain some kind of elusive approval from the universe.

Smash your idol before its temple gets built.

Jerusalem Temple Stones Matt Kennedy

Jesus was right about that temple.  Matt Kennedy took pictures to prove it.

Upside Down

Well, not literally.  I’m not flipping the car or other antics described in the last post.

The publisher of my book about the care giving experience occasionally posts excerpts on the web.  One came up today, and it flips into that “upside down” feeling,

I guess it can’t be any other way. There is no magic cure for autism. You have to take in lots of advice and experiment with different approaches because what lifts the life of one autistic kid could be fruitless or even counterproductive with another.

upside down me

Care giving: actual footage.

The universal manual of “normal” parenting fails to help. Normal parenting is to yell if you spot an emergency in progress. But if we’d raised our voices and warned Joey, “Hey, put that down. You’ll put your eye out,” we’d be living with a Cyclops by now. You learn to use soft, reassuring tones to say, “Honey, you’re standing in front of an oncoming bus there. How about standing with Mommy instead?” You find yourself looking at the world upside down.

Care giving is a practice in which common sense and conventional wisdom take frequent beatings.  Which is why I try to share some spiritual perspectives here from time to time.  Misery loves company as it stands on its head, and it also cries out for help that can bring things into perspective.

And just like that…

ditch

He lifted me out of the pit of despair, out of the mud and the mire.  (Psalm 40:2)

…I was at the bottom of the ditch between north and southbound lanes of the Interstate.

I probably fell asleep at the wheel.  I know that one moment my car was heading north and the next it was turned west, running over an orange construction cone.  I managed to control the vehicle, not slamming on brakes and steering to roll with the the terrain.

I bumped down into the culvert, nosed the car north and, as it was running and did not seem damaged, was working to ease it back up onto the blacktop when I became stuck in the muddy bottom.

Smart phone, auto club, yada yada yada.  Just like that, I was winched out and driving home.  After a County Sheriff showed up and told me he wouldn’t ticket me for reckless driving and just chalk it up to stupidity.

Yeah, have a nice day.

Talking with my wife at home, I found out I’d been snoring the night before.  Full disclosure: I have sleep apnea and use a CPAP.  Came on just like that in my late 50s.  The mask must have slipped in the night and I was probably oxygen and sleep deprived.  The sun through the windshield warmed up the car and just like that, I was westbound on a northbound Interstate.

Just like that, we are old and do old folks’ stuff.  We fall asleep at embarrassing times and drive less aggressively but also less competently.

My wife talked about me needing to recognize my age and not turn around from a late night meeting and drive (which I had) to run right back to work early the next day (did that too).

Just like that, we were into a discussion about formerly easy household tasks that now seem like hard labor, changing diets, things with which we used to roll that now cause impatience, and other old people gripes.

Now, these are not unique to caregivers.

What strikes me is the way we didn’t accommodate the changes and evolve with them as we went along.  Just like that, they’re all in our face.  We didn’t age gracefully or go through midlife crises or any of that.  We went flat out as caregivers and just like that the role mostly went away and just like that we looked around and found ourselves aged.

So back to yesterday’s mishap – down in the ditch, just like that, my inner teenager represented as a compulsion to Instagram the picture of the tow truck setting up to pull me out.

I was struck by the cross-shaped apparatus being deployed atop that green hill not-so-far-away.  It’s the sign of life that Christians see by faith, and Jesus planted it right where we live, among the visible, sensually perceived signs of decay and death.

So my heart, mind and spirit are still in working order (assuming that meditating on the cross while being towed from a ditch isn’t a sign of mental degeneration, which can also arrive just like that.)

Anyway, as you come to the end of a season of care giving, you will find that a bunch of changes set in while you were so busy.  Be gentle with yourself as you recognize and adapt to them.

And don’t drive when you’re tired.

And if you’ve neglected it, commence a gentle turn toward things eternal: In you, O LORD, have I taken refuge; let me never be ashamed.  Do not cast me off in my old age; forsake me not when my strength fails.  (Psalm 71)

Dress Rehearsal

With our son’s new life in a group home comes our reclaimed freedom to have company without having to provide tag team care giving.

In recent weeks we’ve welcomed an eclectic group of friends to come over for a Friday night Bible study.  We look into topics brainstormed by the group.

Last night we looked into death.

As you might imagine, that took us in a number of directions.  One point that seemed to resonate was that life is full of dress rehearsals for death.  We suffer losses, not only of people we love but also of dreams, relationships, health, money, fantasies and you-name-it.

Nothing is held permanently and nothing is 100% under our control – As he came from his mother’s womb he shall go again, naked as he came, and shall take nothing for his toil, which he may carry away in his hand.  (Ecclesiastes 5:15)  That death-like denuding goes on all the time, in the midst of life.

play

Jared Cole photo from here.

 

For caregivers, it happens with a vengeance when we hear the diagnosis that turns us into, well, caregivers.  An envisioned future with a loved one dies and we die to the life we were living to that point.  The call to care giving is a blaring trumpet, announcing a cavalcade of casualties.

The Christian spiritual path is one that takes in such deaths as part of life, as dress rehearsals for the physical death that is the lot of all living beings.  I die every day!, flamed the Apostle Paul.  Yet he affirmed that this was not the final word, but always a preparation for a new and unexpected life to flower, 

You foolish person! What you sow does not come to life unless it dies.  And what you sow is not the body that is to be, but a bare kernel… (1 Corinthians 15:36)

And we can find that the dress rehearsals – those death-like losses life brings – can connect us to a death enacted for us, to empower and transform us in the here and now, not to endure losses with a stuff upper lip or daydream about a heavenly pie in the sky,  but to become life-giving blessings to those in our care; indeed to the whole creation,

I have been crucified with Christ. It is no longer I who live, but Christ who lives in me. And the life I now live in the flesh I live by faith in the Son of God, who loved me and gave himself for me.  (Galatians 2:20)

Let me say it again: the Christian life isn’t stiff upper lip or pie in the sky but, as one of our friends pointed out last night, passionate commitment to life with all its hurts

When Jesus saw her weeping, and the Jews who had come with her also weeping, he was deeply moved in his spirit and greatly troubled. And he said, “Where have you laid him?” They said to him, “Lord, come and see.” Jesus wept.  (John 11:33-35)

and a divine gift to help us move the world with love,

I tell you the truth, anyone who believes in me will do the same works I have done, and even greater works, because I am going to be with the Father.  (John 14:12)

Entertain the thought that care giving is one of these greater works that Jesus promises to load with heavenly power.

And keep rehearsing, even through the death scenes.

Who cares for prisoners’ carees?

A friend who visits prisoners shared this piece that crosses into both of our areas of concern.

state penitentiary

A view of the South Dakota State Penitentiary, Sioux Falls

Care giving tends to be accepted rather than sought out.  It lands on many of us more like a meteor than like Santa sliding gently down the chimney with gifts.

Spouses, grandparents, foster families and others care for the dependents of people in prison.  They accept difficulties that none of us would choose:

FINANCIAL IMPACT OF INCARCERATION ON CAREGIVERS

Financial problems are extremely common for caregivers. Consider these key factors:

  • Family income averaged over the years a father is incarcerated is 22 percent lower than family income was prior to the father’s incarceration. (Western and Petit)

  • Seventy percent of children’s caretakers are over the age of 50. About 55 percent of children live with a caregiver who doesn’t have a spouse. And 19 percent live in households with four or more children living there as well. (Hairston)

  • Caregivers may have to make the decision to leave their jobs in order to take better care of the children. Those caregivers who are no longer working often exhaust their retirement savings in order to pay for the children’s needs. (La Vigne)

  • Forty-one percent of children in kinship care live with families with incomes less than 100 percent of the federal poverty level. (Hairston)

Prison Fellowship and others have creative programs aimed at supporting the care givers outside of the walls.

Care givers are easily overlooked as it is.  The shaming and marginalization of those with a loved one in prison can only add to invisibility.

One of those days…

…on which I woke up at a mellow pace, had a fruitful time in prayer, went to the gym, and am now brewing some coffee with little on the agenda until a friend’s graduation party this afternoon.

In other words, the kind of dawning weekend most folks desire, but which is too often eclipsed.  This is especially true over the years of care giving.  Weekends?  Holidays?  Vacations?  HAHAHAHAHAHAHAHAHA

20180515_123848I read a novel for a library book club (yes, I can go to things like that if so inclined these days).  The title evokes some of my perception.  Care giving calls on us to bury a good chunk of life, especially our many preferences if we are true to the task.

Aspects of who I am are being excavated these days.  It’s uncomfortable rediscovering them.  Was I lazy or a failure to have let them get buried?  Shouldn’t I have kept life in better balance?

Or are such burials loving sacrifices?

These and questions like them exercise my heart today.  I am thankful that I have the time and space to ponder them.

 

We’re being followed

Here’s a bit from Raising a Child With Autism, courtesy of the publisher,

I was more on top of weed-pulling in our first garden. I had the energy of youth, the pride of a new homeowner, and it seemed urgent. Likewise, in the early years of Joey’s life, we were young enough to run ourselves ragged trying to do everything: work on every skill and learning drill, coach him through every small task, try to keep him engaged, clean up after him, visit and consult every expert, and go to every seminar and meeting. As each year passed, we accepted more freedom just to say “no.” We accepted that there would be all kinds of needs and issues all the time.

We also learned more about depending upon others. I pay friends’ kids to pull my weeds these days. In raising a person with autism, there are free services and activities out in the community, and some for which you have to pay. Either way, there are good and competent folks who can enrich the life of a person who lives with autism.  

You can spend all of your time pulling weeds. You’ll have a nicer garden, a sore back, and a growing sense of futility. The job is never done.

20160317_153607

Missing Cushion

Our 28th wedding anniversary comes up toward the end of this month.

We’re coming up on half a year since our 24 year old son with autism, a presence for all but four of our married years, moved to his group home.

20180516_074005Someone described empty nest couples (sorry for the mixed metaphor ahead) as two people finding that “the cushion is gone.”  Two people with a relationship… what? invested in?  distracted by? absorbed with? filtered through? children wake up and find this empty space between them and start trying to scoot together across it.  Or refill it.  Or whatever else people do with empty spaces.

Deferred desires long stuffed under the cushion become visible.  Missed time with friends and extended family, skipped travels, unmade personal touches to home and yard, shrugged off study and career opportunities and piles of other hoped-for endeavors are there, but harder to pick up now that the restrictions of age, time and overworked finances have fallen into that space with them.

Old grievances come into the space.  The demands of the special need were exhausting but they buffered deeper discussions and discoveries that the couple should have shared.  Now these flop in with all of their emotional distortions and disputed memories and toxic colorization of today.

There’s pleasant stuff, too. A gentle pace of life was buried under the cushion and can be restored.  Daydreams can be shared over coffee or cocktails. Decisions can be talked out at length.  There isn’t a frayed and fragile cushion sitting there demanding urgent care.  Life doesn’t have to be lived as a constant emergency response.

The two shall become one flesh says God through Moses, Jesus and the Apostles.  With the cushion gone, the two can dare to shimmy across the couch, risk a hug, chance some words from their hearts, and get on with it again.

A different kind of death

The days after parents hear their child has a disability or special need can be difficult days… Most parents go through a mourning process. The expectations and dreams they may have had for their child die and new ones must take root.  (Sandra Peoples)

003Easter is about an empty tomb.  The expectation that “It’s all over, all is lost” gives way to new life so amazing that, at first, it’s beyond words,

And they went out and fled from the tomb, for trembling and astonishment had seized them, and they said nothing to anyone, for they were afraid.  (Mark 16:8)

May the surprise of Easter give you new hope – new LIFE – in place of whatever you’ve had to give up.  Don’t worry if you can’t hang words on it right away.  Just live it and the One who gives it will help you understand.

I’m no Mary, he sure ain’t no Jesus…

When Joey was a toddler and we were at camp, the thought flooded my head like perfectly heated steam, while the sun poured into my skin like soft lotion. Some distant, bitter stranger, more like a stick-figure with a disproportionate index finger pointing at me was saying “That is blasphemy, you fool and you will writhe in the pit of Godless Hell.” My conscience made no sense of that brittle, screeching thing.

My thought was that Joey was Jesus and I was Mary. Well, not really. It was more like it felt so perfect, that the love was so pure that it had to be the same love. I thought of my other two children. Did I love them less? I loved them as much, no second thought. Immaculate Conception? Did any reader who barely knows me remain in their chair at that thought? Lastly, Joey had never spoken but one word: “tickle,” and at the time I did not know he would not begin to speak until he was almost five years old. Nothing exceptional about either of us, to the outside world, rather unnoticeable unless misbehaving. 

Misbehaving? I shall not digress much but a doctor has mended a gash in my cornea after one of Joey’s meltdowns. As for me, it took a couple of exceedingly large women walking slowly, diagonally across a mall parking lot, no crosswalk, not looking, got an earful from me and yes, I was sober. To my husband’s chagrin, I was shotgun. 

Back to camp. Joey was 2 years old. He had been diagnosed with severe autism 2 months earlier. Out here in the open, running, clapping or flapping his hands in the fresh-cut grass, he had very few sensory issues. An “older” mother, I was 41.

Now I am almost 62, Joey is 24 and I am thinking perhaps God needed me to love him as deeply as Mary loved Jesus to get through the years of violence and injury he brought, mostly to me because I was physically the weakest, emotionally the most vulnerable, and although autistic, he was smart-enough to know it.

And if that was not enough there were the “outsiders:” every  wise-ass parent who saw a neuro-typical looking child like mine behaving badly and concluded it was my bad parenting, or the parent of another autistic child who had all the answers… I should not have immunized him as I did my other 2, I should have spent tens of thousands of dollars for some amazing camp run by people who looked like the people who used to hang at Haight-Ashbury which would “cure” him. Lastly, the 6-figure paid government employees who knew nothing about education but decided what kind of help my son and other children like him would not receive. Those meetings were tortuous hours.

I still feel the overpowering love that I can only guess Mary felt for Jesus, who was helpless to the world. Of course it is completely different. Of course it is not.